Feeling utterly defeated - back to square one. What now?

You have never seen someone so upset at being told they can’t have brain surgery as I have been tonight. :slight_smile: Had my Cine today and immediate follow-up with NS (yes, a chiari expert.) His final assessment is that I have an anatomical chiari but not a “clinical” chiari. He said the cine flow looked beautiful, and it shows the amt. of flow he aims for his surgical patients. He said despite my 5+ years of pain and my list of over 20 neurological symptoms (and the fact that I went numb on the MRI table and almost couldn’t get up due to numbness and back pain),he doesn’t think chiari is the problem and referred me back to general neurology. He did go ahead and schedule an extennsion/flexion MRI, but I think he mainly did it to appease me. He just kept emphasizing that he truly believes surgery would not improve symptoms, therefore he is unwilling to take the risk.

To say I am upset would be an understatement. I graciously left the office and made it out of he building, but completely broke down once I reached the car and sobbed and sobbed. I’m sure my hubby thought I was out of my mind crying over being told I couldn’t have brain surgery. But I can’t help but feel grief over what feels like six years of wasted money on countless tests, doctors, and all the time my hubby has taken off work to accompany me to countless appointments. I feel completely defeated and at a dead end. Second opinion is not an option at this point. With everything NS said today, he has hubby convinced it’s not chiari. He feels it is time to cross it off the list. I don’t know what to do now. If not chiari then what else could it be? I do have an appt with a new neurologist on Friday, but I am so weary, I dread starting over from scratch. It doesn’t help that I woke up with a migraine. The MRI and upsetting news and tears certainly didn’t help matters. Hoping it goes away soon so I can try to get some sleep tonight.

Hopefully tomorrow I will be able to correct my attitude. I should be rejoicing, I know. Lots of people were praying for me today and are so very relieved I do not have to have surgery. All I really want is an answer so I can have my life back. Thanks for listening. :slight_smile:

Just want to clarify. In no way whatsoever am I upset with the doctor. He is a very gentle, kind and compassionate person. I could see written all over his face that he wished he could help me or at least offer some direction. And I could hear him discussing my case in the hall wih other doctors and students trying to think of what could be the issue or if there were any more tests they could do. So I am not wanting to give a bad impression that the doc was not knowledgeable or blew me off. Quite the contrary. The cine flow was clear, and obviously I wouldn’t really want to undergo such drastic measures if it won’t help. I just don’t know what to do now…that is where the sadness and frustration comes from…

Hi Bluebird .I am exactly where you are now.I have seen my NS who is supposed to be the best in this country,but he does not think that Chiari is the cause of my problems.There are too many symptoms to be anything else.I am trying to arrange another appointment with another NS for a second opinion.In Australia we do not have the amount of CMS alternatives that you have,and if I could I would come over there to get advice.I hate the idea of surgery ,but when your life is going as bad as this,then something should be done.Keep tour chin up and keep fighting,I know I will.Good luck.

I'm so sorry you are going through this. I'm glad the doctor was compassionate and caring! Hopefully you'll get some answers from the extension/flexion MRIs.

So, I can understand completely why you are so upset. When I was newly diagnosed I sent my info to Dr Oro in CO, he has a great reputation and helps a lot of people, he’s one if the good ones. His office called to tell me that my herniation was so small it’s not even a Chiari so there was nothing surgical. I just broke down -he advertised himself as a believer of Chiari 0, I thought if he wouldn’t help me no one would. It’s devastating. I cried for few days after that. I’m telling you this so that you know it’s not just you- this happens to a lot of us. But if you keep researching and trying you WILL find a surgeon that can help you, they are out there I promise. And BTW, my cine showed no significant diminished flow either- but when the surgeon actually got in there he found that my brain, my vessels, my nerves, and cord were all adhered together (arachnoid webbing), which had to bet cut out and released, and I had several nerve tumors- all caused by crowding and congestion of CSF. So don’t think that your symptoms are not telling just because this NS doesn’t see his personal criteria on your imaging. There is nothing wrong with the NS refusing to do your surgery, in fact it may be a blessing…maybe he has a poor track record with symptom improvement with his style of operating on small herniations???

I don’t think it’s strange that your unhappy about being told your NOT a candidate for brain surgery- it’s the only treatment for us!! I was bent on getting surgery myself.

As far as your husband…I think he may have heard what he was hoping to hear the whole time. He doesn’t want you to have a brain surgery- he wants there to be a different problem all together with an easy fix. We can’t blame him for that, but that doesn’t mean we agree. We know what we know - you have a Chiari

  • you are highly symptomatic

That’s great you are getting a flex ext MRI!!! You will already have the EDS ball rolling when you find your surgeon. That’s more than a lot of us had right off the bat!

Although it’s very disheartening right now, you just got one step closer to your answer. You may have to consider traveling to get a good surgeon.
Here is my short list- certainly not including all of the great surgeons- just the ones I’ve come to recognize as helping adults with small herniations and who also look at cranio cervical instability.

Rosner, NC
Henderson, MD
Frim, IL
Theodore, AZ
TCI group, NY

So, take a deep breath and restore your hope. This is not a quick process for most of us- if it was we wouldn’t need this support group :slight_smile:



That's good info. Jenn, gave here, just wanted to add I know Heffez in WI isn't too far from you in OH, and he has the most information about CM 0 posted on his website here:


TCI in NY didn't think mine was surgical at 2-3mm, so I'm not sure, but they have MIllorhat there published about problems at the less than the touted 5mm mark. Perhaps, they'll accept yours though, and it doesn't cost anything to send it to them.

Good luck,


There's a difference between not having to have surgery and not being able to have surgery. In this case it sounds like not having surgery means your symptoms persist and you don't get your life back. No surgery is only a relief if you've never suffered from Chiari. It makes perfect sense to me that you'd feel this way.

On the one hand, I'm glad that the doctor is not jumping to conclusions and performing unnecessary surgery. However, is there a plan? I was initially really upset when Dr. Heffez told me I am not a good candidate for decompression. After that, though, he came up with an alternative plan. And, he said we'd return to treating the Chiari if none of the other interventions worked.

It's such a hard wire to walk on. Keep your chin up and don't look down. You're attitude is what it is in the moment and if you need a hug and a cry, then that's what you should give yourself.

Thanks so much. Hugs to all of you. :slight_smile: I am feeling better today. At least I can talk about it now without tearing up and getting emotional. :slight_smile: I guess I just needed some time to process everything. So I made my appt. for my flex/ext MRI, and also scheduled a follow-up appt with the NS to get the results face to face, and possibly try to lobby my case to him one more time. :wink: But the first opening in his schedule was the end of Feb. so I will have to be patient. In the meantime I need to prepare for meeting with a new neurologist. I’m hopeful that he will be helpful to my case seeing as he’s a colleague of the NS. At least he will have ready access to all my notes, and that’s a blessing in itself. Do you have any advice on how I should approach this neurology appt? I want to establish a good relationship with this guy and hopefully have him be the one to take over my case (I’ve decided to fire my local guy that handed me a list of psychiatrists before he ever scheduled me one test. ;-). I need to find out about possible EDS, and also POTS, but I also need him to tell me why I’m going numb, what’s causing the nerve pains and vertigo, and terrible tinnitus, severe headaches, yada,yada, blah, blah… :stuck_out_tongue:

Thanks again, you guys really helped to lift my spirits.

Keep your head up I will cry with you it’s so hard to live in a world where there seems to no help,but there really is an answer for you.My journey was so long I wanted to give up,after 28 yrs. I found the right NS and I went with what I knew to be right,after much research and even more prayer I stepped out to make a choice with the right NS who knew what he was doing.I had never been more sure about anything in my life.Dr.Rosner in N.C.on jcdemar’s list,is my NS and he is truly one of the best.After more than 20+ Drs.not to mention chiropractors,theropist,and naturalpaths with out help.I had not one other opinion from any other neuros.that thought this was right for me,there was no trust in them any way.Follow your gut if you’ve done your homework and the chiari fits don’t give up.If you could come to N.C.Rosner could look at your case.The chiari 0 is a real possiablity my journey was much like yours keep studying your own symptoms and find the right Dr.Good luck please let me know if I can help you.

I can understand how you feel as I sit here waiting for two very judgmental NS are going over my scans together deciding what they want to do for me. Second surgery or neurostimulater. I have sat and thought about things for the last 24 hours since my appointment with the very unkind NS I met with yesterday and I am seeking out another opinion. My who problem is they have to be in my insurance network. I would really like to go to someone who specializes in CM. I really hope you can find some answers to everything going on soon

I'd have to agree with Emmaline, a Neurologist is not the best way to go. Another Neurosurgeon specializing in Chiari would be the best bet.

I got opinions from 5 different NS before having surgery.

1. Went to the "Chiari Specialist" in Pittsburgh and he literally offered me surgery without even looking at my MRI or ordering a Cine' flow MRI. I bolted out of his office.

2. Went to another NS in Pittsburgh who did a friends Chiari surgery(who had a syrinx). He ordered Cine' flow and said the only way he does surgery is if there is a CSF blockage or a Syrinx. My Cine' flow showed almost complete blockage of flow posteriorly. He came into to the room to share the results and said you don't need surgery, even though there is a blockage. He wouldn't even discuss that my symptoms were horrible and he left the room. He actually wrote my PCP a letter stating that I was "mad" because he wouldn't do the surgery!!!

3. I paid the $75 and sent my files to Dr. Oro in Colorado. His nurse called and said the malformation wasn't large enough and he was not recommending surgery. Regular MRI and Cine Flow MRI showed it at 5mm. He said it was only 2 or 3 MM? This recommendation was based on scans, not my symptoms.

After these 3 opinions I waited a year before even considering going to anyone else. I convinced myself that I must be crazy and these symptoms weren't as bad as I thought. This would now be a total of 12 years that I have lived like this. My PCP convinced me to seek out a couple more opinions and researched two other NS in Pittsburgh for me to see.

4. Saw Dr. Engh at UPMC. He spent over an hour with me and my husband and said that with my symptoms and quality of life that he would recommend surgery. He ordered another Cine' flow MRI. While I in the waiting room for this test, I met one of his patients. She was a young girl who had the surgery a year prior. She was having headaches (scarring down of her patch). She loved Dr. Engh though and went on and on about him. I really liked him too and was considering scheduling the surgery, but her having a complication scared me.

5. Went to Dr. Aziz at Allegheny General Hospital in Pittsburgh. My PCP strongly recommended him as she had another patient who recently had the same surgery and was doing great, he also does more brain surgeries than anyone in Pittsburgh and although not a Chiari specialist, does many each year. This is the 1st appt. that I went to without my husband (he had a new job and I felt bad about him taking so much time off). He spent over an hour with me reviewing all of my scans. He then said "are you married", if so where is your husband or a family member? I explained the situation with my husband's new job and he said "I would like you to bring him with your tomorrow morning - I will put you in before all of my other patients". He said the surgery and recovery was something that my husband needed to be fully aware of and on board with. When we returned the next morning he spent another hour with both of us (with a jam-packed waiting room), explaining the entire procedure (cut by cut). He is who I chose to do my surgery - my husband and I were both in agreement on this.

I had surgery on Oct. 8, 2013, so I am about 3-1/2 months out. I am not going to lie, it has been a rough ride, and I am told the recovery will take a full year. My headaches are definitely better (I am so grateful), but I am still having issues with dizziness, vertigo, neck pain, but I think the good days are starting to outnumber the bad. I have also developed a small pseudomeningocele and am back to sleeping upright and 8# lifting restrictions. The NS is not concerned and feels it will resolve itself. I am trying to positive and pray that it will. When people ask me if I am glad that I had the surgery - my response is "ask me in a year". What I do know is that I had no quality of life, and I felt like it was getting worse year after year. If I didn't do the surgery I would always be wondering if it would have helped. Plus, I have a grandson on the way and I really want to enjoy him.

As you can see from my experience, you will get basically a different opinion from every NS you see. You need to find one that looks at the whole picture - not just a scan. Don't give up, as frustrating as it is. These doctors make you feel like you are crazy half of the time, but how would they handle one of our "bad days", or in my case - 12 yrs. of bad days?

Good Luck :)


I understand how you are feeling I also was told that. they also said Chiari was not causing my symptoms. They said I should see a endocrinologist. my symptoms have become more wide spread since then. a few good days then bad days.. I was crushed when they told me I cried and cried. I felt like I was crazy. I told my family I never seeing another doctor. But My husband has convinced me not to give up. Had to pick my self up and brush my self off and move forward. Praying I will find the right doctor. Hang in there Blurbird your in my prayers too!


It all comes down to how much more you can take,I had surgery without any NS agreeing it was the best thing to do.My NS specialist is Dr. Rosner in Hendersonville,N.C.he is a pioneer in the chiari field,but the Neuros in this area know nothing about chiari.It took me 8months to decide what to do and without any second opinion it was a very hard decision,but I had nowhere to get any help.I went 27yrs.+ without a correct dx!it was live in the state I was in or do the surgery and hope for the best.With a whole lot of prayer and information I felt I had to do it.It has been a blessing to get relief and Dr. Rosner is the only one I could trust and I am so grateful to him for hearing my symptoms and doing the right tests.This illness is not understood by most Neuros they can’t help us make good choices because they know little about what to look for,mine was boarderline and they feel there can be no symptoms without a 5mm herniation,but that is so wrong!!!Hope you can find help but it probably won’t be from a reg. NS NL,You need a specialist that does many decompression each year.Hope you get help soon,you’re in my prayers.